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OT - need a different perspective help pls
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melly2210 posted:
I spent yet another wasted 4 hours at the opthalmologist today. He told me nothing new. My vision has worsened over the last two months. There is nothing pathologically wrong with my eyes. There must be a problem with the optic nerves and the sight center of my brain. I know my vision is worse. We've known since March there is nothing wrong with the eyes and it has something to do with the nerves. This particular dr wants to do another, different specialized MRI (I've already had 3 of those not including the initial MRI in the hospital when the sudden onset happened AND the CT Scan and Lumbar Puncture) and something called a VEP which is a form of an EEG to monitor brain waves while I stare into a patterned screen. If the tests come back with nothing, he will need to refer me to a specialized vision center in Miami (I'm in Tampa...10 hr round trip). The center isn't on my insurance plan, but Blind Services may help pay the costs, if not all. But they could say no too. It will likely require even more tests or repetitions of the ones I've had already.

I've reached the point of just being tired of being poked and prodded. I'm exhausted. And every appointment, I let a tiny part of me hope someone can tell me what is wrong. And they never can. I just REALLY want to sink into the darkness and figure out how to live.

The thing is since they don't know what is wrong that's causing me to go blind (the tech at the office today told me I should be on Medical Marvels...b%*ch) they cannot say if it's genetic. There isn't any history of this on either side of my family. I have two children. If it is genetic, there may be something they can do to screen and/or prevent this from happening to them.

I'm torn. I want to just give up. If it gets to the point of going to Miami, we can't afford the trips down there, let alone any medical expenses. And God forbid they want to do some kind of invasive procedure - I am too far from home. I don't know how my mental health is going to continue to hold off. Told hubs and my oldest that a crisis center is pointless. My depression is situational and sitting in a place full of chaos to think about a new perspective isn't going to work. I can't leave the problem behind. It can't be checked at the door.

Maybe I'm just being realistic. I'm going blind and I am going to have to learn to live with it. Maybe if we figure out what is wrong then I can somehow save my kids from this and protect hubs who isn't handling this well at all. Or maybe I've just given up hope. I have periods of total darkness now on and off. I feel alone and isolated. No one around me has any idea what I am going through or even what to say to me. And the other reaction is to worry over me and fuss and fuss and fuss. I've lost so much independence. Before, even without the car, I'd have walked the few miles to the bus stop or hopped on a bike. Now? I can barely get myself less than an 1/8th of a mile to the corner store where I am lectured about going by myself either by the staff or neighbors. Yet no one comes by to visit or ask if I need anything. Not even family. My SIL lives around the corner and takes dinners to families who are just ill with the flu, but not once has that been offered to me to spite the difficulty in cooking and hubs busting his azz at work to make sure there is extra $ around just in case.

I think I am just seeing things all wrong. I'm weighing out my choices and decisions and I can't seem to move out of the con column of each one. HELP!?!?!?!

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
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monkeybee responded:
This is not the response you are looking for because I am not sure how to help. I just want you to know that I admire your courage and strength. Even without a mental illness, your situation would cause a breakdown and somehow you are holding it all together. As far as not being able to move out of the con column, I think that is understandable given the circumstances. I'm just so sorry you were dealt such a painful hand and I hope there is some light very soon for you and your family. ((hugs)) Sarah
 
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melly2210 replied to monkeybee's response:
Thank you Sarah. I honestly have no idea how I am hanging on. I think it might be just trying to keep track of everything...who I talk to with which organization, dr, insurance company, social worker, etc. It is insane.

I just really really think I need to find something for the pro column. I just don't know what.

Thanks for your support and for caring.

Mel

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
 
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jselleck replied to melly2210's response:
Melly,

I also admire your perseverance. I do nothing but spin my wheels over and over. You have two strong sons who look up to you, and a husband who loves you. Despite all you've been through in your life you still carry on. I know I would have given up a long time ago. Some how you'll survive. You're too strong a person to give up. You will make it through this.


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